We FINALLY got our first appointment with Shriners Hospital for Children in L.A. That is in mid-February. She'll be going to the "Arthrogryposis Clinic" that day, most likely seen by several Dr's that specialize in different parts of the body, as well as physical and occupational therapists. After that, their findings will be sent to the board and the chief of staff for them to evaluate if they feel Little Lady could benefit from their care (I have very little doubt that they will accept her as a patient for continued care after that appointment.)
Between this, and her new Ortho appt coming up, I feel as if things are beginning to move forward for us at last. I have Hope!
Monday, January 17, 2011
Monday, January 10, 2011
New Orthopedic Dr
Yes! Little Lady goes to see her new Orthopedic Dr on the afternoon of the 24th!
It is my understanding that he has (at least) some experience with AMC, so that's a starting point.
So let's *Hope* for a great new Dr!!
It is my understanding that he has (at least) some experience with AMC, so that's a starting point.
So let's *Hope* for a great new Dr!!
Friday, January 7, 2011
Changes in 2011
After A LOT of thought, and debating... we have left the health plan we were with for the past 8 years. They were great with preventive care, and they were really good for all of us when we were "young and healthy", but the minute we started needing specialized care (i.e. Little Lady's condition), it all went down the toilet. And with the group, the physicians you can see are limited to the specific organization. So we were kind of painted into a corner because they were not doing much of anything to help Little Lady.
So, as of the 1st of the year we all have a new health insurance, with a much broader range of physicians and medical offices that we can choose from.
Tuesday we went to meet Little Lady's new pediatrician. That woman is GREAT!! A little quirky, but she sure seems to be getting the job done. After all those months with our former health plan, they were always hesitant to put the diagnosis of AMC (arthrogryposis multiplex congenita) into Little Lady's charts. Mostly for two reasons, it seems. 1) Little Lady doesn't have the most common form of the condition, which is Amyoplasia type, so they couldn't recognize it as well. 2) Her case is mild, so they were kind of writing it off.
So at our appt with the new pediatrician, we addressed all of the issues. The Dr. did not downplay the condition, and did chart it as AMC. So already, we are making progress. She then ordered X-rays so that we could see Little Lady's hips, and hopefully they will no longer be shallow and we can get her out of the Pavlik Harness. Also, the new pediatrician ordered a STAT referral to a new Pediatric Orthopedic doctor. WhoooHooo, the ball is rolling! (today, I got the phone call saying the referral, as well as additional X-rays were already approved. I can call the new medical center on Monday and hopefully get Little Lady's appt with the new Ortho scheduled).
A few things: The new pediatrician (who is not an Orthopedic Dr... just a standard pediatrician) spotted something that two other Ortho Dr's missed at our old health plan. One of these Dr's I asked point blank about this issue and he said "no, it's normal". So on Tuesday, the new pediatrician says "Oh, she has a little bit of a rocker-bottom on her feet, huh?" I was like... "Ummmm... well, the other Dr's failed to catch that. I even asked one about it point blank and he said it was normal."
Anyways "rocker-bottom" means that Little Lady has a vertical talus. Because it can be a problem that may even involve surgery, I'm pretty ticked off that the other Dr's just let that one slide. So already, I have seen that our decision to change insurance plans was the right choice to make.
I am anxious to get in with the new Pediatric Orthopedic Dr. I am hoping that he/she will address all of the issues and concerns with my Little Lady, and not downplay any of them. Her case of AMC may be mild, but as far as I'm concerned, that's all the more reason to GET ON IT with the treatments. Her case is mild, so let's get the best results we can from treatments NOW while she's still young. That way as she gets older, her condition will be less of a problem for her.
So, with the new Ortho Dr, I am hoping to address:
Occupation/Physical therapy
Dynamic Bracing and/or Casting for her knees
Her extended/curved index fingers
Her upper extremity lack of strength (is it shoulders? biceps?)
Vertical Talus
Anything else?....
Also, we have been in the middle of the application process with Shriners Hospitals for Children for a while now. I'm thinking within the next two weeks or so, we should find out when our appointment date is with them. I have big hopes for this... and plan to address all of the same issues from above, with the Dr's here. I am on pins and needles anticipating this, so I hope it happens fast!!
So, as of the 1st of the year we all have a new health insurance, with a much broader range of physicians and medical offices that we can choose from.
Tuesday we went to meet Little Lady's new pediatrician. That woman is GREAT!! A little quirky, but she sure seems to be getting the job done. After all those months with our former health plan, they were always hesitant to put the diagnosis of AMC (arthrogryposis multiplex congenita) into Little Lady's charts. Mostly for two reasons, it seems. 1) Little Lady doesn't have the most common form of the condition, which is Amyoplasia type, so they couldn't recognize it as well. 2) Her case is mild, so they were kind of writing it off.
So at our appt with the new pediatrician, we addressed all of the issues. The Dr. did not downplay the condition, and did chart it as AMC. So already, we are making progress. She then ordered X-rays so that we could see Little Lady's hips, and hopefully they will no longer be shallow and we can get her out of the Pavlik Harness. Also, the new pediatrician ordered a STAT referral to a new Pediatric Orthopedic doctor. WhoooHooo, the ball is rolling! (today, I got the phone call saying the referral, as well as additional X-rays were already approved. I can call the new medical center on Monday and hopefully get Little Lady's appt with the new Ortho scheduled).
A few things: The new pediatrician (who is not an Orthopedic Dr... just a standard pediatrician) spotted something that two other Ortho Dr's missed at our old health plan. One of these Dr's I asked point blank about this issue and he said "no, it's normal". So on Tuesday, the new pediatrician says "Oh, she has a little bit of a rocker-bottom on her feet, huh?" I was like... "Ummmm... well, the other Dr's failed to catch that. I even asked one about it point blank and he said it was normal."
Anyways "rocker-bottom" means that Little Lady has a vertical talus. Because it can be a problem that may even involve surgery, I'm pretty ticked off that the other Dr's just let that one slide. So already, I have seen that our decision to change insurance plans was the right choice to make.
I am anxious to get in with the new Pediatric Orthopedic Dr. I am hoping that he/she will address all of the issues and concerns with my Little Lady, and not downplay any of them. Her case of AMC may be mild, but as far as I'm concerned, that's all the more reason to GET ON IT with the treatments. Her case is mild, so let's get the best results we can from treatments NOW while she's still young. That way as she gets older, her condition will be less of a problem for her.
So, with the new Ortho Dr, I am hoping to address:
Occupation/Physical therapy
Dynamic Bracing and/or Casting for her knees
Her extended/curved index fingers
Her upper extremity lack of strength (is it shoulders? biceps?)
Vertical Talus
Anything else?....
Also, we have been in the middle of the application process with Shriners Hospitals for Children for a while now. I'm thinking within the next two weeks or so, we should find out when our appointment date is with them. I have big hopes for this... and plan to address all of the same issues from above, with the Dr's here. I am on pins and needles anticipating this, so I hope it happens fast!!
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